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Which Story to Tell?

December 3, 2012

The following message from RHAC Executive Director, Brian Lester, appeared in The London Free Press on Saturday, December 1, 2012 - World AIDS Day.

HIV/AIDS –Which Story to Tell?

December 1st is World AIDS Day and I have been debating which HIV/AIDS story to tell. Shall I share the good news UNAIDS report of a 50 percent reduction in infections across 25 countries? Should I note the promising phase one results of the first and only preventative HIV vaccine developed by Dr. Chil-Yong Kang and his team at Western’s Schulich School of Medicine & Dentistry? Should I mark this moment with the fact that with early access to treatment people living with HIV can anticipate a life span similar to their HIV negative brothers and sisters? 

Such developments in the fight against HIV/AIDS indicate strong signs that we are on a promising trajectory toward a cure. Each of these good news developments will help move the world toward the UNAIDS goal of zero new infections and zero deaths. But what about their goal of zero stigma!  In the context of “getting to zero stigma” the other HIV/AIDS story must be told. It’s a story that reveals stigma’s profound negative impact on those living with this virus. HIV stigma could be the single most powerful deterrent to reaching the 2015 UNAIDS goals.

A 2102 report funded by CIHR Social Research Centre in HIV Prevention entitled “HIV and AIDS in Canada: A National Survey Summary Report” indicated the following facts;

• 16% of Canadians “feel afraid” of people living with HIV
• 18% would be somewhat or very uncomfortable working in an office with someone living with the illness
• 23% expressed discomfort shopping at a small neighborhood grocery store owned by someone living with HIV/AIDS
• 35% would be somewhat or very uncomfortable if their child was attending a school where one of the students was known to be living with HIV
• 54% would be somewhat or very uncomfortable with a close friend or family member dating someone with HIV

Such statistics are a clear indicator that after 30 plus years many people in Canada continue to hold irrational fears on the subject. These fears drive stigma and challenge HIV/AIDS work on many levels. Stigma is defined as “a mark of disgrace associated with a particular circumstance, quality, or person”.  There should be no disgrace in living with HIV yet in 2012 stigma continues to deter people from accessing care, treatment, testing and support. Because of this fact the consequences of HIV stigma can be deadly.

This leads me to reflect on the recent passing of an individual who found his way to our services this past year.  “James” was a 39 year-old man, who over the past 10 years, could not seem to find his way through HIV stigma to seek out life saving treatment. He couldn’t make the call for help. He couldn’t acknowledge his status to others for fear of losing his family, friends and employment. He couldn’t disclose because of the paralyzing fear caused by HIV stigma! When he became sick he finally contacted us - but it was too late. His HIV/AIDS related illnesses had advanced to a stage where treatment was not viable. He passed away in a few short months.

The passing of James and others like him offers a stark reminder that even with such hope on the horizon, HIV/AIDS continues to be a serious illness with life altering and even life ending impacts. If only there was medication or a vaccine to treat or cure HIV/AIDS stigma? On World AIDS Day and every day Regional HIV/AIDS Connection continues to stand in solidarity with those living with, affected by, or at risk of HIV/AIDS. The hopeful story of a cure is on the horizon but until then the story of HIV stigma needs to change.